Defining the Options

With advance directives in place, resources organized, and the person’s care assessed, the actual planning can begin. It is best to take a short-term and a separate long-term approach to planning. Immediate needs must be met while plans for likely future needs are constructed.

It is also best not to confuse planning with wishful thinking. The most effective approach is to hope for the best, but plan for the worst. Alzheimer’s disease is progressively debilitating. Planning for the worst-case scenario acknowledges that nursing home placement may be required at some point in time (costing as much as $5,000+ per month in some areas) and that home care could become even more expensive. Realistic planning for the potentially high cost of long-term care forces the family to find the estate-planning and community-support solutions that can preserve the person’s independence as well as his or her savings (which may be needed for the caregiving effort, for the needs of a well spouse or a family’s future).

Most care-planning options turn on two primary factors: cost and living environment. Mapping out a care plan often requires that a family compromises between competing priorities. Quality of care is usually the top priority and it is usually defined in terms of the venue of care. The home is most often preferred, but resource and caregiver limitations may force a compromise choice for placement in a more restrictive setting.

There are many residential choices for people with Alzheimer’s disease. Residential choices will be governed first by concern for the individual’s safety in daily living. Safety is measured by actual physical risk for injury and also by behavioral and emotional stability. These risks are reduced by incrementally higher levels of supervision, personal care assistance, and restrictions on freedom of movement. Home care for a person with Alzheimer’s disease may not work if he or she cooks unsafely, smokes unsafely, or tends to wander. In such cases, the family may be forced to hire 24-hour supervision, or provide it themselves. And even if this is affordable, it may not be the best choice for all concerned.

The next least-restrictive setting may be an assisted living facility with some private-duty care. If a person’s cognitive function and self-care ability has declined to where he or she requires more supervision, a rest home or specialized dementia-care facility may work-still less restrictive (and less expensive) than a nursing home, but possibly safer and often less costly than 24-hour home care. And community programs may also subsidize all of these options for income- and asset-eligible patients.

Behavior management often makes planning for Alzheimer’s care particularly difficult. But at the end stage of the illness, behavior management may become less of a challenge than basic personal care and intermittent nursing services. Care planning must anticipate a sequence of living arrangements that may, ultimately, result in a return to the home. Many people with Alzheimer’s disease become home care patients once again, for the final stage of the illness.

Long-term, chronic care can be likened to an expedition. As with all good expeditions, planning is a prerequisite to success. For a plan to work it must be adaptable and it must be based on good information. The more knowledge one has about the nature and course of Alzheimer’s disease, the better. Combining knowledge with the basics of long-term care planning greatly increases the likelihood that a loved one will receive the best care available and that s family’s journey will be as smooth as possible.